U.S.A.

We’ve heard from several of our partners that they will be attending this year’s Lysosomal Disease Network WORLD conference next month. Will you be there? If so, let us know! Please send us an email so we can try to make arrangements to meet. Fo...

We are delighted to bring you are second video in our new series called Advocate to Advocate. We created this series based upon feedback you provided to us. Namely, you’d like to learn more about best practices, and to hear more from advocates aro...

Several years ago, our patient advocacy team convened a group of rare disease caregivers - the parents, partners, siblings and loved ones of people with rare diseases – to learn more about their daily challenges and needs. In doing this, we quickl...

Calling all patient advocates in North America! Drug Information Association, the nonprofit organization that provides knowledge resources across the full spectrum of medical product development, offers a Patient Advocate Fellowship Program as part ...

In our everyday work, my colleagues in Patient Advocacy and I see firsthand the challenges faced by individuals and families living with lysosomal storage disorders (LSDs). Much of the work is centered on learning about these challenges and trying t...

On Friday September 20th, 2013 from 9:00 am to 4:00 pm Pacific Time, the Global Genes | RARE Project will be hosting their 2nd Annual Patient Advocacy Summit. A live webcast will be available for patient groups unable to make the event in person (Re...

As a member of Genzyme Patient Advocacy, I had the opportunity to attend BIO’s annual convention in Chicago earlier this year. Because BIO is more widely known as a trade association for biotechnology, I was delighted to see their thriving “Alli...

It is difficult to imagine there could be anything harder to hear – your child has a life limiting illness and there is no cure or treatment. Nothing can take those immediate fears away, but knowing that you are part of a community of people who u...